M. Scott Perry, MD

In this episode, “Family Burden and Lifelong Care Planning in Dravet Syndrome,” the panelists explore the far-reaching impact of Dravet syndrome on caregivers, families, and support networks.

This episode, titled “Dravet Syndrome Disease Modification Beyond Seizure Control,” features panelists discussing the evolving role of disease-modifying therapies across the full spectrum of Dravet syndrome, including adolescents and adults.

In “Emerging Therapies in Dravet Syndrome,” our panel explores how investigational therapies may reshape the future treatment landscape for patients with Dravet syndrome.

In “Unmet Needs and the Impact of Disease Modifying Therapies in Dravet Syndrome,” the panelists explore the limitations of current treatment approaches and discusses how emerging disease-modifying therapies may transform the future management of Dravet syndrome. Expert faculty review the significant advances achieved with currently available antiseizure medications while acknowledging that substantial unmet needs remain for many patients and families.

This episode, titled “Dravet Syndrome Treatment Monitoring and Goals for Long-Term Management,” features panelists discussing the practical considerations that guide treatment selection and ongoing management for patients with Dravet syndrome.

In “Dravet Syndrome Managing Refractory Seizures Across the Lifespan,” our panel explores the ongoing challenges of treating refractory seizures in patients with Dravet syndrome despite significant advances in available therapies.

In this episode “Current Treatment Strategies for Dravet Syndrome,” the panelists explore how genetic findings influence treatment selection and long-term management in Dravet syndrome. Expert faculty discuss the practical realities of treating patients when clinical suspicion for Dravet syndrome exists before genetic confirmation is available, emphasizing the importance of initiating appropriate management early and avoiding therapies that may worsen outcomes.

In “Interpreting Variants of Uncertain Significance in Dravet Syndrome,” our panel explores one of the most challenging aspects of genetic testing: the interpretation and clinical management of variants of uncertain significance (VUS).

In “The Role of Genetic Counseling and Community Resources in Dravet Syndrome,” our panel explores the critical role genetic counselors play throughout the genetic testing process and the broader impact of establishing a molecular diagnosis for patients with Dravet syndrome and other genetic epilepsies

In this episode, “Navigating Unresolved Genetic Findings in Dravet Syndrome,” the panelists explore the challenges clinicians face when genetic testing fails to identify a clear cause of disease and discuss the importance of ongoing re-evaluation in patients with suspected genetic epilepsies.

This episode, titled “Genetic Testing Approaches in Dravet Syndrome,” features panelists discussing the rapidly evolving landscape of genetic testing and how clinicians can navigate the growing number of testing options available for patients with suspected Dravet syndrome.

In “Dravet Syndrome Diagnosis and the Impact of Genetic Testing in Epilepsy,” our panel explores the growing role of genetic testing in confirming a diagnosis of Dravet syndrome and the clinical implications of identifying pathogenic SCN1A variants.

In this episode, “Identifying Dravet Syndrome Earlier with Genetic Testing,” the panelists explore the clinical scenarios that should prompt consideration of a genetic etiology in patients with unexplained epilepsy.

Welcome back to another Neurology Live Peer Exchange series. In this episode titled, “Recognizing Dravet Syndrome in Patients with Unexplained Epilepsy,” expert faculty discuss the burden and heterogeneity of epilepsy and the challenges clinicians face when evaluating patients with unexplained seizures.

In this final segment, Perry reflects on how zorevunersen represents a shift toward disease-modifying therapies in epilepsy and what this means for the future of genetic epilepsies. [WATCH TIME: 2 minutes]

In this fourth segment, Scott Perry, MD, outlines the design of the registrational EMPEROR trial and what it aims to confirm about zorevunersen’s long-term safety and clinical benefit. [WATCH TIME: 2 minutes]

In this segment, epileptologist Scott Perry, MD, discusses zorevunersen’s effects on Vineland-3 scores and why improvements in communication, cognition, and adaptive behavior matter in Dravet syndrome. [WATCH TIME: 3 minutes]

Epileptologist Scott Perry, MD, reviews findings from the early-phase Monarch and Admiral trials, highlighting zorevunersen’s dose-response profile, seizure reduction, and safety outcomes. [WATCH TIME: 3 minutes]

In this kick-off segment, epilepsy expert Scott Perry, MD, explains how zorevunersen uses antisense oligonucleotide technology to correct SCN1A gene expression and address the underlying cause of Dravet syndrome.

Experts noted that the Lennox-Gastaut Syndrome Foundation is a welcoming platform for collaboration, research advancement, and career development in the field. [WATCH TIME: 3 minutes]

Experts discussed strategies to improve LGS clinical trial design, better understand comorbidities in rare epilepsies, and foster collaboration across stakeholders. [WATCH TIME: 5 minutes]

Experts discussed gaps in LGS research, including biomarker development, sleep assessment, and early intervention strategies to improve diagnosis and outcomes for patients. [WATCH TIME: 6 minutes]

Experts underscored that stakeholder collaboration, including clinicians, caregivers, and industry partners, can play a critical role in advancing understanding and management of LGS. [WATCH TIME: 3 minutes]

Experts discussed initiatives to standardize data collection, expand registries, and empower families in advancing care for Lennox-Gastaut syndrome. [WATCH TIME: 3 minutes]

Experts highlighted the need for clearer treatment sequencing and improved transition of care for patients with LGS from childhood to adulthood. [WATCH TIME: 3 minutes]

Panelists discuss how improving adoption of newer Dravet syndrome therapies requires early genetic testing by general neurologists who should then collaborate with specialized centers of excellence, maintaining local neurologist relationships for ongoing care while leveraging expert guidance on appropriate medication selection, dosing, and management to ensure that patients receive optimal treatment regardless of their geographic location.

Panelists discuss how promising disease-modifying therapies including antisense oligonucleotide and viral vector treatments are currently in clinical trials and target the underlying SCN1A gene defect, rather than just treating seizure symptoms, showing encouraging results in seizure reduction and nonseizure outcomes such as language development, though these therapies will likely complement rather than replace existing medications when they become available in several years.

Panelists discuss how despite newer medications such as cannabidiol, stiripentol, and fenfluramine being available for several years and recommended as first-line therapies, claims data reveal that only 7% to 25% of patients with newly diagnosed Dravet syndrome receive these treatments, with many clinicians still defaulting to older, less effective medications due to lack of practical guidance on dosing and titration protocols for the newer therapies.

Panelists discuss how newer medications such as stiripentol have become preferred over traditional options such as valproate for younger patients, emphasizing the importance of assessing treatment effectiveness within 6 to 8 weeks rather than accepting "pretty good" seizure control, and encouraging frequent communication with families to optimize therapy and pursue meaningful seizure reduction rather than settling for partial improvements.

Panelists discuss how treatment selection for Dravet syndrome requires individualized approaches based on seizure types and patient characteristics, emphasizing the importance of striving for seizure freedom, avoiding contraindicated sodium channel medications, utilizing synergistic drug combinations when appropriate, and simplifying medication regimens to twice-daily dosing with clear timing cues to improve family adherence to complex treatment plans.